In CF denial?

[JPintheHouse]

Hi, I'm 28 and finally have decided to open up to others about my CF. Has anyone else kept it quiet for as long as they could? How did it feel to get it out there in the open?

I just started telling people one-on-one and thought I was NOT going to get emotional, but indeed have. So far people have been supportive of me though. Just wondering about other experiences. Thanks.

Sorry I posted this under pregnancy! I didn't realize that was going to post like that!

 

[Printer]

You are not a mass murderer, you have inherited a genetic disease. It is OK to tell people.

Bill

 

[welshwitch]

JP I totally went through a similar thing. I wrote about it in my blog if you want to check it out!

Basically, the whole "coming out" process was really a watershed time for me. Not only was I admitting it to others, but most importantly I was admitting it to myself. I actually saw a counselor at my CF center for support during that time. She described it aptly, for me: I was "waking up" to my reality that I had CF. She was also able to shed some really helpful insights on why I had been so afraid of revealing my condition (had to do with how my parents had handled CF and their fear associated with it).

I think it's a great thing to embrace your health condition and the best part of it for me was that I engaged much more in my health after coming out of denial. I think I am healthier now than I was in my 20s! (When I couldn't deal with treatments, etc.)

Good luck and PM me if you have any questions!

 

[JPintheHouse]

Thank you so much WW for your reply. It's almost like being diagnosed for the "first time". Keep up with your treatments! I am with mine. Let's stay healthy! We have life to live.

 

[LouLou]

JP, If you've been doing your treatments and going to your clinic appts I wouldn't consider yourself in denial. We see people here who are either in denial because 1) their parents never told them they have cf or 2) they don't want to do their treatments and may be in denial about the reprocussions of choosing not to treat their cf will have on their lifespan.

Being secretive, as I believe you and WW are describing was a stage that a majority of us went through at some point with our disease. Whether it's to advance career wise, make friends, or for some other reason. You are not alone. Like I said, many if not most went through it sometime mostly between teen to early adulthood.

Congrats on your coming out! You won't always be emotional about it. I was always fine 1 on 1 but then when I would public speak I was a basket case. WW is right on. I felt very vulnerable. It kept driving me to try again. I was mad that I couldn't do it. It started to effect my public speaking about all things. I joined Toastmasters because I wanted to be a good presenter in the industry I was working in. It took a while to regain my confidence to present, but now I can tell you I really enjoy speaking in front of crowds regarding CF especially! Having a largely unmedicated vaginal delivery of my son was very empowering. Having him diagnosed with cf and seeing us almost 5 years later thriving is the best medicine for my courage. Additionally, I have found my voice and sharing my story brings money to the CFF which will hopefully result in a cure...nothing there to be ashamed about.

 

[JPintheHouse]

Thank you for the responses. You have all been encouraging. Yea for no longer being in denial! : )

 

[hannahj1d]

JP, though I know I'm late. I was/am in denial about my CF. I was diagnosed at birth (being 3 months premature) and have until this day struggled with taking my meds and treatments regularly. Until I was about 11 or 12 my parents made me take them, but once I got old enough I realized they couldn't force me to, they'd take priviledges etc away, but that never helped. I am now 19, and have been hospitalized about 3-4 times a year for the past 2 years, compared to when i was younger I was hospitalized once a year. I know the repercussions of not doing my treatments etc, but I am in denial about those as well. And I know that I'm shortening my life span but I just couldn't be bothered to think about the future, only the day at hand and living life "normally".

People have always told me that I should be used to taking my meds, "oh i bet that's nothing" "we're going to add this to your daily regime, is that okay?" etc, of course I say yes, but that doesn't mean I do it. Since I didn't do anything for my health in the last 7 or so years it's almost like being a newly diagnosed patient, because i'm not used to taking medicines, I haven't had to schedule my own appointments before, I don't usually schedule my day with 2 (30-45) minute treatments in the thought process. I just go, and if iI remember or I feel I have time to take my meds/treatments then I do, but I certainly haven't ever planned my life around it in anyway, it's just not a thought that crosses my mind everyday. As strange as that sounds, I honestly do NOT think about my meds/CF daily unless I am sick.

I think a large part of it was that when I was younger going to the hospital was almost like a getaway, I called it my vacation, I knew all teh nurses, I got to play games, I got to eat whatever I wanted and didn't have a bedtime. When I was sick I got what i wanted, I got attention that I may not have gotten at home, I never got in trouble. It was things like that, not to say the world revolved around me, but my parents worlds DID. And I loved it, I loved not ahving to worry about getting in trouble or going to school or anything like that. And I knew if I didn't take my meds atleast a couple of times a year, this "vacation" would happen.

Now, that I look back on it I would say I was a brat. I would say that I was stupid for jeapordizing my health. But honestly, for the past few years when I leave the hospital, I say I'l try to get better at it. And I do... for about 2 weeks and it slips my mind one day and I just say "oh well, once won't hurt" but it does, and it's stupid. and now I have college and a job, opportunities I never thought I would. A boyfriend of 2 years, whom I can see myself being with for a very, very long time. I want a family, I want all kinds of normal things and I'm scared because it could all be taken in a moment.

 

[JPintheHouse]

hannahj1d, please start taking better care of yourself! Once you get to a certain point, your body doesn't really get better. Live each day the best you can and make time to care for yourself. As you get older and have to pay for your own health, you will realize the importance even more. It's good motivation for me to do my treatments and take vitamins. You just need to get into a routine. Sometimes it helps to do treatments in the morning that way you know you did it at least once that day which will help improve your functions. I made an excel spreadsheet for all my vitamins, meds, and treatments (even my cycles! trying to concieve) If you want a family, you need to change your mind, your direction, and your purpose. Good luck!

 

[CFSurvivorGabrielle]

Hannahj1d- Thank you for sharing. I am much the same way. I am 20 and have trouble getting myself to do my treatments. I'm glad I'm not as alone as I've felt in the world of empowered CF fighters. I have always wondered how people got themselves to do every single treatment, and remember every single pill. The only thing was, My father never made me do my treatments at home when I was younger. The only thing that was ever forced on me was my enzymes and even then he would forget at times as well. The only thing I can say is that if you get into a routine at the hospital, stick with it when you get home. See how long you can keep it going but don't beat yourself up if you slip again. I started out only doing things a week or so after I got out and now for at least a month after I get out of the hospital I'm on top of everything 100%. I have gone from every 3 months needing the hospital to every 6 months or so (my last one was in early April and just had my latest checkup and they say my FEV1 has stayed where it was since after that visit). My father was the one who noticed this trend. Hes happy. He said "The mean time between failure is getting longer" and he fully believes I will get to a point where I'm always doing everything at least 95% of the time.